From a Reader:

re: Neupro Trial
I learned today that enrollment in the metro Detroit Neupro trial I mentioned recently is open until 11/30 only.  So don’t delay (HA!)  Contact me at mcws@juno.com for info
Cathy

INFO from a READER:

The information you provide and the uplifting personal side are fantastic. I’m hoping you can help me spread the word about a Neupro Patch trial. I used the patch with GREAT success for severe RLS, and like so many was devastated by its recall. After a great deal of effort (begging, pleading, etc.) my neurologist is now working with UCB on a trial of the patch. They are looking for more patients. Is there any way that you can help me get the word out? This trial is being conducted in the Detroit metropolitan area, and would require a visit every 3 months. Considering the cost of the patch if people are buying out of the country, it might be cheaper to fly to Detroit! I am in absolute HEAVEN after just a few days back on it and would love to share the joy!! I can be reached at mcws@juno.com

A new and distressing symptom has started. I’m drooling a LOT at night and I awaken with my pillow wet and my face wet.  This has not affected me during the daytime hours, and so I’ve begun some research to find out how to deal with the excess saliva or sialorrhea in medical lingo.

I’ve found that many PWP (people with Parkinson’s) are dealing with this issue and there are some creative and sensible ways to reduce the amount of saliva or deal with leaking saliva without resorting to drug therapy.  At this time in my life, I really do NOT want to take additional meds for any reason.  I am so hopeful that managing the current medications I take will be effective in helping me stay active and effective in  my personal and work life without adding another drug.

While there are some good drug therapies out there to deal with drooling, I will refrain from addressing those here and let you pursue that with your own neurologist or physician.

PWP (people with Parkinson’s) do not have excessive saliva production.  The normal amount of saliva produced by most people is 33 or 50 ounces daily.  That’s roughly 4 to 6 cups of saliva per day.  That’s a LOT of saliva that we normally swallow and don’t notice!  The problem with drooling occurs when the saliva is not being swallowed normally.  In PWP (persons with Parkinson’s) the muscles in our bodies are struggling to operate normally.  The lack of dopamine in our brains directly affects the neural circuits in our brains and that affects our movement.  The muscles in our throat are affected so our automatic swallowing decreases and saliva collects.

Becoming more conscious of swallowing can often help reduce the drooling.  There are strategies to assist in becoming more aware of the need to swallow:

1. Chew gum or hard candy (hopefully sugar-free) so that the tactile clue from that activity encourages swallowing.
2. Decrease the amount of sugary foods you intake since sugar increases the production of saliva.
3. Keep your head tilted upwards with your mouth closed – when not speaking or eating.
4. Breathe through your nose and keep your lips closed.
5. Since fluids are lost when drooling, be sure to drink more liquids to stay hydrated.
6. Drink from a straw whenever you can since that helps to exercise the muscles in the face that keep your lips shut.  Strengthening these muscles will help the saliva to stay in your mouth as you practice keeping your lips shut.
7. And as I have found that I drool at night – use a small towel on your pillow to absorb the saliva.

During my research on this topic I have found that some PWP respond to the juice in pineapple to help thin their saliva.  For people who are more severely affected by Parkinson’s Disease their caregivers have crushed up pineapple pieces and placed small pieces in their mouths.  I know that the acidity in fresh pineapple can bother some folks. So, I would suggest doing this with small canned pineapple pieces.

The thickening of the saliva can also be a problem for PWP.  Drinking fluids, juices and water are crucial to keeping hydrated.  Some of the drugs we take for PD can also cause our mouths to feel dry and sticky.  Then coughing happens because of the thickness of the saliva and difficulty swallowing.  In this situation others have suggested the pineapple juice diluted with water since pineapple contains enzymes that thin the saliva.

Above I mentioned using a straw to drink liquids.  Using a straw is good for strengthening the mouth and facial muscles.  However, I do know that speech therapists offer excellent exercises that can help in that as well.  If your swallowing (or not swallowing as the case is in drooling) continues to cause problems, I would encourage you to mention this to your doctor/neurologist and get a referral to a speech therapist.

Overall my research has led me to the conclusion that there are no simple answers or solutions to this problem.  As mentioned earlier there are drugs (Botulinum toxin injections) that can be injected into the mouth, or surgery to reduce the amount of saliva that is produced.  But short of drug and surgical therapy there isn’t any completely effective way of solving this problem.

So, as we continue to adapt to Parkinson’s Disease in every other facet of our lives – we continue to adapt to the onset of drooling as well.

Keep your sunny side up!

We can NEVER forget that drug manufacturers exist to make a profit in every market segment.

Today UCB announces its’ interim report for the first nine month (three quarters) of 2009.

“Since the approval by the European Commission in June 2009 for UCB to
again promote Neupro® for Parkinson’s disease, and to launch the drug
for restless legs syndrome, more than 33 000 patients are currently
being treated with the drug in Europe. European neurologists have
welcomed the drug’s return and the cold-chain storage and
distribution system is well-accepted. Neupro® is now available in
Germany, Italy, Spain and the U.K. and in nine smaller European
markets for Parkinson’s disease. It is launched in Germany and the
U.K. and two smaller European markets for restless legs syndrome.
Launches in other European markets will follow in the coming months.
In the U.S., an extensive update on Neupro® and cold-chain storage
and distribution was submitted to the Food and Drug Administration
(FDA) in June 2009. Dialogue with the FDA continues. UCB expects to
be able to make Neupro® available for U.S. patients again during
2010.
UCB will communicate its view on the sales potential of Cimzia,
Vimpat and Neupro with the publication of its 2009 results on 2 March
2010. “  For the PDF version of this document, go to: http://hugin.info/133973/R/1349065/325044.pdf

This report focuses on the projected profits that UCB anticipates in this FY for these three products.  Of course, the Neupro patch is the product in which I am most interested.  Additionally, from the number of hits on this blog and the comments I receive, there are MANY readers who are also interested in the upcoming release of the Neupro patch for Restless Leg Syndrome and Parkinson’s Disease.  UCB is facing the reduction of revenue as Zyrtec’s patent expires.  Therefore, the release of the Neupro patch in the United States will be an important revenue stream for UCB in the 2010 to 2012 time frame as these other patents expire.

I usually just don’t pay attention when I’m feeling yukky….I try to ignore it and push through it – working, cooking, taking care of errands, etc.   Sometimes the achey feeling in my body is just too much to ignore.  Today I feel BLAH, not specifically, but generally….just blah,  yukky, nothing in particular causing it – just BLAH.

In some circles this achey feeling could be called PAIN.  This is not a specific sharp pain as I might have with a cyst on my ovary or appendicitis.  People with Parkinson’s Disease typically have stiffness, lack of flexibility, rigidity and slowness of movement.  However, PAIN is not one of the classic symptoms/identifiers of PD.  So, what is causing this achey, dull feeling that could be described as PAIN?

I am not having dystonia or pain from that type of muscular twisting.  Nor am I exhibiting dyskinesias and any pain from repeated jerking movements.  The pain is just a dull, thud and doesn’t seem to fade.  I haven’t fallen lately or bumped into a table or cabinet.  In fact, for the first time in many months I am sleeping without drugs and able to sleep mostly through the night.  So, I cannot attribute this pain to exhaustion as I did earlier in the long, hot, Texas summer.

For many PWP (persons with Parkinson’s) this experience of achiness and discomfort becomes a part of the fabric of our daily existence.  We try to ignore the discomfort, or we take an over-the-counter pain killer to help us forget it’s there. Even that only works for a little while.  I don’t have any “clinical evidence” to define the presence of PAIN or achiness in people with Parkinson’s Disease.  I only konw that it is present in my body and I associate it with my PD.

Sometimes slow, long stretching sessions do help reduce the pain.  But when my neck, shoulders and upper back are affected it is difficult to stretch those body parts very much.  Then I rely on mild over-the-counter pain relievers and a warm heating pad or hot water bottle.

I believe I do need to re-define the meaning of “dull achiness” and just flat out call it “pain”.  If you are a person with Parkinson’s Disease, I encourage you to do the same.  If we re-define our terms and draw attention to it, then our doctors will see that pain is a part of Parkinson’s Disease.  It’s not a revolution I propose, just a more accurate way to bring attention to the path we live and walk.

Young Onset Parkinson Conference
October 23-24, 2009 – Dallas, Texas

There’s more than one way to be part of the first NPF/APDA Conference!
Can’t take a weekend to fly to Texas? Follow the recent trend of taking a Staycation and try a Stayconference?

Attend Live Webcast at no cost!

Hear from experts on a wide range of topics, even submit questions online, all from your own home.

The Webcast is not strictly for younger people with PD, much of the information will pertain to people with PD of all ages.
Click here to view Webcast schedule, presentations, and speakers.

Pre-registration is requested, and can be completed via our web portal.

NOTE: Registration for the full conference in Dallas is closing Oct.
15, 2009.
Go to  www.parkinson.org/yopc for details

Parkinson’s Disease is usually found in patients 60 years of age or older.  While younger patients have been diagnosed with the disease, we also know that persons as young as 20 to 30 years old have also been diagnosed.  We call that “Early Onset” when the patient is under the age of 50.

Young or Early Onset patients struggle with the same symptoms of rigidity, slowness of movement, and tremors.  Since there is not cure for Parkinson’s Disease these young people are in the prime of their lives, working, raising their children and yet, dealing with a disease that can be painful and depressing.

For young people dealing with Parkinson’s Disease can be exhausting and troublesome.  It’s encouraging that scientists like those at the Boston Univeristy School of Medicine are researching Early Onset Parkinson’s Disease.  It’s hard enough for our aging population to deal with this disease.  But seeing young people in the same struggle not only hope for a cure but for answers to their dilemna is a great reason for scientists to continue research into this facet of the disease.

Researchers have identified genes that contribute to the onset of Parkinson’s Disease at an early age.  These genes are different than the genes that have been identified for the susceptibility of developing the disease.

Scientists at Boston University School of Medicine made this discovery while analyzing the data of a genetic study in a sample of 857 unrelated familial PD cases. That data was combined with data from previous genome-wide associated study of 440 idiopathic PD cases.

According to the joint lead author, Jeanne C. Laturelle, DSc, from the Department of Neurology at the Boston University School of Medicine, “Important distinctions can be made between those genes that influence susceptibility for developing disease, and the genetic modifiers that influence onset age.”

Thank God scientists like these in Boston are working to identify these areas of Early Onset and our susceptibility to developing this disease.  I pray for their continue funding and clarity in their research.

Boston University Medical Center. “Genes Associated With Onset Age Of Parkinson’s Disease Identifiied.” ScienceDaily 8 October 2009. 10 October 2009

The subject of my chocolate consumption has always been a standing joke with my family and friends. One of my co-workers suggests that if I’ll do a task for him he’ll send me chocolate.  Truly the way to motivate me is to offer me chocolate…not the expensive Godiva (although I’ll GLADLY take it off of your hands!) but just the normal, grocery store chocolate bars.

So, today I stumbled upon an interesting article published in March, 2009 Journal of Neurology.  Chocolate consumption is increased in Parkinson’s Disease reports results from a self-questionnaire study that shows Parkinson’s Disease patients (or people with Parkinson’s = PWP) actually do show increased consumption of chocolate!  See, this is NOT my imagination or a plot to manipulate my loved ones for more of the yummy stuff!!

This study had almost 500 PWP and their partners complete a questionnaire asking about chocolate and sweets consumption, the changes in their consumption and their depressive symptoms.  The PWP showed significant increase in chocolate consumption versus the control group.  So, now why is that??

We all know that chocolate has the reputation of being a mood lifter and we associate chocolate with pleasure.  But something I discovered from this study is that chocolate contains β-phenylethylamine, a substance produced by our bodies that can act as a neurotransmitter. This substance also crosses the blood/brain barrier (unlike carbodopa which needs levadopa to do that in PD treatment).  Chocolate also contains caffeine and some of its’ structures have antiparkinsonian effects.  So, there are at least two substances in chocolate that can positively affect PWP.

I’d rather eat chocolate than take all the meds I currently take for Parkinson’s Disease!!  So, bring it on!  Let’s serve chocolate at every neurologists’ office visit and physical therapist appointment.  The only questionable side effects would be acne and weight gain….and I haven’t had acne in many, many years.

I’ll take the side effect of weight gain and exercise more now that I can state a REASON for increased chocolate consumption everyday!  YIPPEE SKIPPY!!

The following article was in Science Daily. I’m interested in your opinion of this study.  Please leave your comments.  I’ll be posting mine in the next few days.

Thanks,

Allie

Drivers With Parkinson’s Disease At Higher Risk Of Crashes In Low Visibility

ScienceDaily (Oct. 5, 2009) — Drivers with mild to moderate Parkinson’s disease may be at higher risk of crashes on foggy days and other times of low visibility. The research, involving a driving simulation test, is published in the October 6, 2009, print issue of Neurology®, the medical journal of the American Academy of Neurology.

In addition to affecting movement, Parkinson’s disease affects visual skills, such as the ability to see contrast, and the speed of processing what is seen.

The study involved a driving simulation test taken by 67 people with mild to moderate Parkinson’s disease and 51 healthy people about the same age. First they drove in good conditions, with clear skies. Then they drove in a foggy, low visibility situation, leading up to an intersection where another vehicle posed a crash risk.

More people with Parkinson’s disease were unable to avoid the crash—76 percent versus 37 percent. Their reaction time was also longer—2.7 seconds compared to 2.1 seconds. For those who crashed, those with Parkinson’s were driving at an average speed of 49 mph at the time of the crash, compared to 39 mph for those who did not have Parkinson’s.

“Our results suggest that a large proportion of drivers with Parkinson’s disease may be at risk for unsafe driving in low visibility situations such as fog or twilight,” said study author Ergun Uc, MD, of the University of Iowa in Iowa City and Veterans Affairs Medical Center of Iowa City, who is a member of the American Academy of Neurology.

Those with Parkinson’s also had more instances where the car’s wheels crossed over the center line or the shoulder line than people who did not have Parkinson’s, and their performance worsened with the change from good to poor driving conditions.

Among those with Parkinson’s disease, those who performed the worst on the driving test were those who had the lowest scores on tests of visual processing speed, motion perception, sensitivity to visual contrast and speed of movement.

The study was supported by the National Institute of Neurological Disorders and Stroke and the National Institute on Aging.

Interesting development! I’ve been asked to be a blogger on Wellsphere’s HealthBlogger Network, a network of over 2,900 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). My posts will be there (as well as here) and readers will be able to link to other Parkinson’s Disease informative sites. More to come! Allie

Allie

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